If You're a Caregiver, Find a Mentor
The holiday season always seems like the perfect time to express gratitude for what we've been given. Obviously, this year has been especially difficult due to the decline of my mother, who died in September of Chronic Obstructive Pulmonary Disease (COPD) and Alzheimer's disease. Still, I find that I am especially thankful for the life lessons that have come from having taken on the caregiving role and I am also grateful for the tremendous support that I've received from family, friends, and this community.
As we approach this holiday season, I'd like to take the liberty of expressing my gratitude in this share post for everyone who has provided such wonderful support for me.I especially want to give thanks for three special people who "mentored" me through the two years I spent providing care for Mom.
These three - Anna, Debbie, and Amy - had significant experience being knee-deep in the care giving trenches on a daily basis for family and friends. Each came at care giving from a different perspective, but what they taught me was very valuable and helped me think about what type of caregiver I wanted to be. Each provided sound advice when I was stumped and they were also always available to commiserate or to provide a pep talk when I just needed to vent.
Let me tell you a little bit about them and why they are special - and why I'd encourage those of you who are family caregivers to find similar types of people to serve as your guide on your care giving journey.
Anna: Teaching Lessons About Family and Compassion for the Elderly
Many of you who have read my columns over the past two years have heard about Anna. First of all, let me tell you that my mom loved Anna dearly; I think she would have adopted her in a New York minute. I'd even go as far as saying that Anna and Mom were "soul mates" after their first meeting in the 1990s.
So when Mom was safely situated in the hospital emergency room in September 2005 after having an uncharacteristically violent emotional outburst (this was immediately prior to her diagnosis with Alzheimer's), Anna was the first person I called for help. Sitting on the sidewalk stoop in front of the emergency room driveway, I was in emotional shock, not sure which way to turn. I knew that Anna was one of two friends at that point who had dealt with frail parents, so I punched her phone number into my cell phone.
While navigating through a fast-food drive-through to pick up lunch for a group of co-workers on that bright September day, Anna tried to calm me down. She asked about the background information on what was happening with Mom, coached me on what to ask the doctors, inquired when my father would arrive, and tried to help me think about what might be ahead.
Once Mom was placed in a nursing home, Anna always made time during our visits to have long conversations about care giving that led to key insights for me. From these heart-to-heart exchanges, Anna taught me critical lessons about family issues related to care giving, as well as the deep compassion needed to do care giving well.
A warm and caring woman who worked for many years as an elementary educator, Anna (with the support of her husband) moved her mother into their home when her mother's health failed. Although Anna's mom didn't have Alzheimer's, there were still emotional outbursts that tried their mother/daughter relationship. From these tales, I learned how to put up an "invisible" barrier that would allow my mother's angry outbursts (all due to Alzheimer's) to bounce off my psyche without ripping apart the strong relationship that my mother and I had built over 40 years.
Furthermore, Anna's stories of how she had to come to grips with the dynamics within her family (one of her siblings lives in the same city, but wasn't always available to assist with caregiving duties) provided me with the insight to see how these caregiving issues could affect familial bonds, in both positive and negative ways. I determined at that point that I needed to find ways to involve my father (who at that point lived in another city at a distance) and brother (who lived in another state), so I would not end up feeling put-upon because they wouldn't hold up their ends of the bargain.
Anna's role-modeling extended in other ways in that she cherished her time spent with elderly friends. She actively helped to take care of two elderly neighbors during their final years, stepping into the role of volunteer caregiver in both cases. She chose to take over situations in which their families couldn't or wouldn't assume the primary care giving role. One of these elderly friends, Lorraine, died at home in 2006 from dementia with Anna by her side. During the two years that Mom was at the nursing home, Anna made it a point to make the several hour-long trips to see my mother at the nursing home. She always used this time to hug Mom warmly, ask questions and tell stories, and bring some trinket or lotion (as well as her quick-witted husband) to brighten Mom's day.
Debbie: Teaching Lessons About Organizing One's Life to Provide Care
The other person I called for advice when Mom was in the emergency room in September 2005 was my long-time friend, Debbie. She had been through caregiving with both of her parents (neither of whom had dementia). In fact, Debbie was the sibling who remained off the professional fast track in order to organize the caregiving so that the family could keep their parents at home.
An accountant by training, she had been trying to find which professional path to take when her parents became frail; however, I believe that she quickly found one of her callings - caregiving - because it was thrust on her. She quickly learned what needed to happen and became "a natural" in confronting these important situations that her parents faced.
Because Debbie had organized her parents' last years, her advice was so valuable because she had firsthand knowledge of the fragmented medical services, the challenge of finding good caregivers, and the ongoing necessity of demanding excellent care. Although Mom was too medically frail to remain at home due to her failing lungs, I took Debbie's lessons to heart in standing up to the nursing home staff when Mom's care wasn't up to par.
I also learned from Debbie's experience the importance of taking time for oneself. Debbie always tried to find a bit of time during her multiple years of caregiving, whether to go on a week-long vacation or to spend two hours catching a movie. These efforts to find breaks (in whatever way possible) helped her maintain the stamina necessary for the caregiving experience. Her example gave me permission to make my own self-care a priority while taking care of Mom.
As one of four siblings, Debbie also had family dynamics to deal with. Her tales of negotiating a four-way agreement with her brothers and sister about her parents' care giving issues provided a good model for me in how to tend to the important family relationships, keep the communication lines open, and also to make sure that the loved one's care takes precedence.
Amy: Teaching Lessons on How to Let Go of Control
It was almost eight months after Mom was diagnosed that I started having conversations with Amy. A professional colleague and friend who also had been an elementary school teacher and counselor, Amy had dealt with all of the issues related to Alzheimer's because her mother had spent her last years with this disease. Additionally, Amy had to negotiate the challenges of ensuring quality care at her mother's retirement community.
My conversations with Amy almost always had a "been there, done that" quality. For instance, my mom wouldn't let the nurse's aide help her brush her teeth during the last six months or so. When we expressed concerns to the nursing home staff about Mom's foul breath, the staff members reported that they were worried that if they tried to force her to brush her teeth, Mom would bite down on the toothbrush and then swallow it.
Amy related that her mother had a similar experience. This proved to be a pattern; most of my mother's experiences matched up with what Amy's mother went through. And Amy's advice was always sound in helping me determine the best care-giving path for my mother.
And Amy knew, better than most of my friends, the downward spiral that was coming. This past summer, I had a long visit with Amy about Mom's medical situation. Amy looked at me and said, "I hope this isn't out of line, but it's time for her to go. She needs to move on." By saying that, Amy planted the seed that I needed to comprehend. The end was near, and I needed to begin to process the idea that I was going to need to let go. The final goodbye was on the horizon.
I could see Mom's physical struggles with my own eyes, but moving out of the denial phase - that all was OK and Mom wasn't dying - wasn't easy. But slowly, I began to see what was forthcoming, started emotionally giving Mom permission to go when the time was right, and started contemplating what life without Mom would be like.
Lessons in Being Grateful
In late September, Mom died. During the next weeks, I had an opportunity to talk to a lot of my family members and friends. Each person had played an important role in my support structure while I was providing care for my mom.
But one of the things I made a point of doing was personally thanking Amy, Anna, and Debbie for what they had done. Each replied that they hadn't done anything special, but I disagree. Each helped me build a mental model of what caregiving can be. Each provided important counseling concerning caregiving issues and shared their experiences, both good and bad. And each helped me to deal with the daily problems but also keep an eye on the long-term issues that could and would be coming down the pike. Without these three ladies, I don't believe I would have been as successful in what is one of life's most difficult tasks.
I hope that every care giver out there finds his or her own version of an Amy, Anna and Debbie. They may be friends or relatives. You might meet them at an Alzheimer's support group or in passing at a restaurant. Or you might meet them here on this forum. But whatever you do, find a mentor for caregiving. It will help you be thoughtful in your choices and assist you in making decisions that are meaningful both for you and your loved one who has Alzheimer's.